Alternatives to project-specific consent for access to personal information for health research: Insights from a public dialogue
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
Learn more about PhilPapers
Donald J. Willison, Marilyn Swinton, Lisa Schwartz, Julia Abelson, Cathy Charles, David Northrup, Ji Cheng & Lehana Thabane
BMC Medical Ethics 9 (1):18- (2008)
BackgroundThe role of consent for research use of health information is contentious. Most discussion has focused on when project-specific consent may be waived but, recently, a broader range of consent options has been entertained, including broad opt-in for multiple studies with restrictions and notification with opt-out. We sought to elicit public values in this matter and to work toward an agreement about a common approach to consent for use of personal information for health research through deliberative public dialogues.MethodsWe conducted seven day-long public dialogues, involving 98 participants across Canada. Immediately before and after each dialogue, participants completed a fixed-response questionnaire rating individuals' support for 3 approaches to consent in the abstract and their consent choices for 5 health research scenarios using personal information. They also rated how confident different safeguards made them feel that their information was being used responsibly.ResultsBroad opt-in consent for use of personal information garnered the greatest support in the abstract. When presented with specific research scenarios, no one approach to consent predominated. When profit was introduced into the scenarios, consent choices shifted toward greater control over use. Despite lively and constructive dialogues, and considerable shifting in opinion at the individual level, at the end of the day, there was no substantive aggregate movement in opinion. Personal controls were among the most commonly cited approaches to improving people's confidence in the responsible use of their information for research.ConclusionBecause no one approach to consent satisfied even a simple majority of dialogue participants and the importance placed on personal controls, a mechanism should be developed for documenting consent choice for different types of research, including ways for individuals to check who has accessed their medical record for purposes other than clinical care. This could be done, for example, through a web-based patient portal to their electronic health record. Researchers and policy makers should continue to engage the public to promote greater public understanding of the research process and to look for feasible alternatives to existing approaches to project-specific consent for observational research
|Keywords||No keywords specified (fix it)|
|Categories||categorize this paper)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
No references found.
Citations of this work BETA
No citations found.
Similar books and articles
Donald J. Willison, Valerie Steeves, Cathy Charles, Lisa Schwartz, Jennifer Ranford, Gina Agarwal, Ji Cheng & Lehana Thabane (2009). Consent for Use of Personal Information for Health Research: Do People with Potentially Stigmatizing Health Conditions and the General Public Differ in Their Opinions? BMC Medical Ethics 10 (1):10-.
Larry O. Gostin (1997). Personal Privacy in the Health Care System: Employer-Sponsored Insurance, Managed Care, and Integrated Delivery Systems. Kennedy Institute of Ethics Journal 7 (4):361-376.
Eline M. Bunnik, A. Cecile J. W. Janssens & Maartje H. N. Schermer (2013). Informed Consent in Direct-to-Consumer Personal Genome Testing: The Outline of A Model Between Specific and Generic Consent. Bioethics 27 (3):343-351.
Lawrence O. Gostin (2001). Health Information: Reconciling Personal Privacy with the Public Good of Human Health. [REVIEW] Health Care Analysis 9 (3):321-335.
Atsushi Asai, Motoki Ohnishi, Etsuyo Nishigaki, Miho Sekimoto, Shunichi Fukuhara & Tsuguya Fukui (2002). Attitudes of the Japanese Public and Doctors Towards Use of Archived Information and Samples Without Informed Consent: Preliminary Findings Based on Focus Group Interviews. [REVIEW] BMC Medical Ethics 3 (1):1-10.
M. Sheehan (2011). Can Broad Consent Be Informed Consent? Public Health Ethics 4 (3):226-235.
W. Baird, R. Jackson, H. Ford, N. Evangelou, M. Busby, P. Bull & J. Zajicek (2009). Holding Personal Information in a Disease-Specific Register: The Perspectives of People with Multiple Sclerosis and Professionals on Consent and Access. Journal of Medical Ethics 35 (2):92-96.
O. O'Neill (2001). Informed Consent and Genetic Information. Studies in History and Philosophy of Science Part C 32 (4):689-704.
Thomas Ploug & Søren Holm (2012). Pharmaceutical Information Systems and Possible Implementations of Informed Consent - Developing an Heuristic. BMC Medical Ethics 13 (1):30-.
Meri Koivusalo (2010). Common Health Policy Interests and the Shaping of Global Pharmaceutical Policies. Ethics and International Affairs 24 (4):395-414.
Oonagh Corrigan (ed.) (2009). The Limits of Consent: A Socio-Ethical Approach to Human Subject Research in Medicine. Oxford University Press.
B. Capps (2012). The Public Interest, Public Goods, and Third-Party Access to UK Biobank. Public Health Ethics 5 (3):240-251.
Robert Streiffer, Alan P. Rubel & Julie R. Fagan (2006). Medical Privacy and the Public's Right to Vote: What Presidential Candidates Should Disclose. Journal of Medicine and Philosophy 31 (4):417 – 439.
Gordon R. Mitchell (2001). Defining the Subject of Consent in DNA Research. Journal of Medical Humanities 22 (1):41-53.
Added to index2010-08-24
Total downloads5 ( #255,802 of 1,410,018 )
Recent downloads (6 months)1 ( #177,059 of 1,410,018 )
How can I increase my downloads?